My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: Neurontin

Post navigation

Day by Day with a Movement DisorderPosted on May 8, 2016 by DBMay 10, 2016

I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.

Well, I “slept” without the Clonazepam last night. It wasn’t good sleep, by any means, as I have no idea how many times I woke up and waited to go back to sleep for a bit – but I made it through.

Of course, because of the long half-life of this benzo, I still have some of that last .25mg pill from Thursday night in my system. It will take the rest of the weekend before I dare try going back to my old meds – Methacarbamol and Neurontin. I have called for a Neuro appointment, but no telling how long it will be before I can actually see him.

Maybe this couple of months off my usual meds will make them work better for me again. I had been gradually increasing the doses to the maximum, because they were no longer helping with the muscle spasms and pain. And the high doses were making the brain fog worse. That’s why I had asked for a med change, and how I came to be back trying Clonazepam.

I decided to look back through all my blog posts for every mention of Clonazepam, as I had been on it once before, back near the beginning of this saga. At that time I was on Parkinson’s meds, and the extreme muscle weakness I experienced was attributed to the combination of meds. Now I know that’s probably not the case. The wet noodle muscle weakness I described back then is exactly how I’m feeling now.

Asking for Help Doesn’t Come Easy

DH has done his best to take up the slack here at home, helping with things I would normally do quite easily. I had gotten very frustrated with him, because he wasn’t helping. But he’s not a mind reader, and I hadn’t actually asked him for help. So we had a “come to meetin’ talk” the other night. Now the air has been cleared, and I’m getting more help. I still have to remind him, as he had gotten in the habit of letting me do a lot of stuff he once would have done automatically. His paralyzed leg and slow recovery from his heart attack changed both our roles considerably. But for now, I’m more in need of help than he is. And I’m getting it, sometimes after asking, sometimes without asking.

I did ask DH to bring the walker back upstairs, but I’m resisting using it, just as I did years ago. My DD fussed at me yesterday when she saw how slow and shuffling my gait has gotten, saying I needed to get over my pride and go back to using it. I know she’s right, but it’s a hard change to make. It feels like defeat. And in my mind it’s so much more VISIBLE than my gait – it makes me conspicuous, and that’s something I am NOT comfortable with.

This whole process of slowly going off one set of meds, then slowly going on another med, slowly increasing the dosage, then slowly cutting the dosage back to nothing has taken a couple of months. It’s the only safe way to transition from such powerful chemicals, and it’s the only way to find out if something different will help any more than what I was already on.

So I continue being a clinical trial of one, basically using myself as a guinea pig, praying each time that something will work to improve my quality of life.

Titrating Off Clonazepam

Last time I wrote I was still slowly ramping up the Clonazepam dosage, hoping to get some pain relief and help with my hyper emotions. Well, it did calm down the startle reflex and extreme frustration and irritability I was experiencing, but it did NOT help with the muscle spasms. In fact it made my muscles so weak that I’ve been doing a lot of shuffling of late, either because I could not lift my feet, or due to the fear I would fall again, if I did pick up my foot in mid spasm.

So now I am working on titrating back off of the Clonazepam. Even when I was up to three .5mg pills a day, I did not get any pain relief, so it just wasn’t worth it.

I’m down to .5mg at night, but not taking any during the day. Yesterday was horrible, with legs so weak and painful it was all I could do to get up from the chair, but today is better.

I don’t plan on going back on the Methocarbamol and Neurontin until I’ve given plenty of time for the Clonazepam to be out of my system. They didn’t help much, and made the brain fog worse, but it looks like they are still the best meds I have available. The half life of this benzo compound is like 60 hours, so it takes a looooong time to rid the system of it completely. That long half life is great for smoothing out anxiety issues, not so great when it makes the muscle weakness worse.

Another Diagnosis Anniversary

Another birthday has come and gone, making this my 10th year with some kind of movement disorder diagnosis, not counting all those years when doctors dismissed me as just a whiny hypochondriac female LOL. Initially it was thought to be Parkinson’s, but was eventually conclusively diagnosed as Mitochondrial Myopathy.

I’m basically my own doctor at this point. No new research findings in the years I’ve known what was wrong, so it’s left to me to try various nutrition programs and what I think might be helpful in the way of meds – with my Neuro’s approval, of course.

At my last appointment, my Neurologist broached the subject of me eventually being fitted with some kind of AFO braces to support my legs better, as my age is beginning to work against me. Exercise intolerance is one of the hallmarks of this disease, so I have to strike a balance between not moving enough (trying to keep from hurting) and moving too much (which damages muscle cells and does more harm than good).

So I thank God for the better day I’m having today, and continue to do what I can to improve my quality of life.

I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

I’ve been on the Lamotrigine morning and afternoon 25mg dose for 4 days now, and only the first morning caused me any problems. I went back to sleep after breakfast on that first morning I took a morning dose, and I slept almost 3 hours. That is an extremely unusual thing for me to do. But I haven’t been sleepy since then. It may be helping a little bit, but nothing spectacular. I’m still jerking pretty badly if I’m under even the least amount of stress, which seems to be a lot of late.

One of my triggers seems to be getting in any kind of a crowd, so Church is always very stressful for me. I’m very self conscious about the jerking, and I feel bad for the people who sit behind me, as it must be very distracting.

But I’m not zonked on it, as I was when the Neurontin dose was increased. That’s a good thing. And I know I’m on the smallest dose size the Lamotrigine comes in, so there may be some room for adjustment to lessen the jerks a little bit more. I’m hoping that’s the way it will work out, without putting me in a daze the way the Neurontin did.

I don’t think I’ve ever really explained what the Primidone and Lamotrigine prescriptions are for. They are actually used as anti-seizure meds, and the Lamotrigine can be used with Bipolar Disorders and Depression disorders. The Clonazepam the MDS tried me on first, as well as the Neurontin, were also meds used for seizures and depressive disorders. (Which I thought made it odd that they depressed me!) So it’s kind of like taking a pig in the poke for medicine.

Their use for Essential Myoclonus is considered an off-label use, and from everything I’ve been able to read, the medical profession really doesn’t understand how these meds work in the brain. Evidently when they work properly they calm down whatever erratic electrical signal there is that’s coming from my brain that sets off these muscle spasms.

This is where having a Neurologist I trust is so very important, and a pharmacist who watches over every medicine I take, prescription as well as over the counter. I wouldn’t think of buying some of my prescriptions at one pharmacy and others somewhere else. It’s just too dangerous for me.

So I’m trying hard to be hopeful that my Neuro will find a good balance on my medicines and get me back to where I’m not jerking so much. And I’m fighting the blues, although I certainly haven’t won that battle yet.

I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

Well, I found out one thing the last few days. I can’t handle 2 Neurontin pills 3 times a day, on top of 3 Primidone pills twice a day. I stayed in a stupor from Monday through Wednesday, trying to give my body a chance to adjust to the new meds level, but I just couldn’t take it. So, in order to enjoy Thanksgiving with my family, I took 1 Neurontin Thursday morning, and none at lunch. Then I took 1 with a light supper. I’m only taking one with each meal now, and we’ll see what the doctor says on Monday. If it weren’t for the “walking on Jello” feeling I have when my foot jerks unpredictably while I walk, I would put up with the shoulder jerks, rather than take the extra medicine. But I’m unsteady on my feet without the meds, plus seeing the slowing called Bradykinesia, and unsteady from being looped when I’m on them, plus the slowing. Go figure.

But we had a very good Thanksgiving together as a family, and I enjoyed being with everyone – especially our daughters. Of course, I enjoyed seeing our grandkids, but they spend most of their time texting and playing games, so we don’t see much of them. Our younger daughter cooked a beautiful turkey, and our older daughter did a lot of the other cooking. She made the girls shuck and scrape the corn. That was fun, because they had never done that before. It brought back memories, because it’s been many years since I shucked corn, either. I even got a great big hug from my “cool” grandson, which was extra special!

I must admit that all the hustle and bustle of preparing the food on Wednesday wore me out, even though I did very little to help. Mostly I just sat in a daze. LOL!

So I have a lot to be Thankful to God for this year. Our family has been through some rough times, but things are being dealt with as best we can, and with God’s grace, time will heal the worst of the wounds. We are so much more fortunate than many that there’s no way I can count all our blessings. Thanks be to God for His unspeakable Gifts!!!

OK, that’s what my hubby has to say about it. We had good news today. My blood work was all OK and my MRI was clear, so that seems to leave side effects of my meds as the reason for my terrible memory. As for the jerking, I had one good day, and then it was back like it had been. So my Neuro told me today to double the dose of Neurontin he recently put me on, in addition to the doubled doses of Primidone I was already on. I’m hoping that lets me enjoy our family time for Thanksgiving without jerking or being a zombie. Neither one sounds very pleasant.

So, we have plenty to be thankful for with this good medical report. May God’s blessings be showered on you as well!

I have not jerked as much yesterday and today, but I can certainly tell I’m on a new med. I’ve been sleeping much more and much more deeply. That’s not necessarily a bad thing, and will probably become less pronounced as my body adjusts to the Neurontin. My legs, however, have been much less dependable. It’s hard to say if I’m shaking more, losing my balance, or if my legs are just weaker, but whatever is going on … I’m definitely having some difficulty walking. I have that walking on Jello feeling again, and I haven’t felt like that in a long time.

But I’ve only been on the Neurontin for 4 days now, so let’s hope these are side effects that will subside. I should find out the MRI and blood test results Monday hopefully. I don’t expect them to show anything, but it will still be good to have the results. Patient? Me? Not hardly!

I’ve postponed writing about the increase in my jerks and twitches over the last few months, hoping that it was due to more stress than usual and would go away on its own. But it hasn’t. I called my Neurologist about a month ago to let him know that I was getting worse, and his nurse called back to tell me to increase my dose of Primidone to 2 pills twice a day. I did that for a couple of weeks, with no help at all, so I called back. This time he said to take 3 pills twice a day. Well, that didn’t help, either.

So I called the other day to see what he’d suggest, and I went to see him today. He’s added Neurontin (Gabapentin) to my 3 at a time Primidone dose to see if that helps. He asked me if I had ever been on it, and I couldn’t remember that I had. It wasn’t until I just now did some Googling for Neurontin and Essential Myoclonus that some of my old posts on this blog popped up. I have been on it before, and I had really bad nightmare problems with it, and it didn’t help with the jerks, either. Since I will be in his office building tomorrow, while I’m there I’ll see if he wants to try something else instead.

I had shared some very disturbing to me loss of memory incidences of late, so he has scheduled an MRI for tomorrow. He also had some blood drawn to check for thyroid problems and B12 levels. I’ll probably get those results later on this week. I can’t imagine that my B12 would be low, considering what we eat, but a thyroid problem is certainly a possibility.

The jerks are nerve wracking for me and worrying my dear sweet hubby, so I pray that the added medicine will help. I pray that the blood tests and MRI will help my doctor decide what might be going on with my memory. It may just be a side effect of the very medicines that help me to have a good Quality of Life in other ways. Primidone is one of the ones I take that can cause memory problems, and I’m now on 3 times as much as I was originally taking! And the Triavil I take at night helps to keep my digestive system behaving itself. And he named one other prescription I was on that could cause memory loss, but I forgot which one he said. (ironic?)